Prenatal testings and screenings can be great tools when used appropriately. They can help doctors assess potential health care issues and make a plan of action to give the baby the absolute best chance of surviving at birth. They can also help with medical advances to improve the lives of babies with disabilities and birth defects — consider, as an example, the work of Dana Bianchi, founder of the Mother Infant Research Institute. She has been able to discover, thanks to prenatal testing, that there is a window of opportunity in the first trimester before the brain changes in Down syndrome take place, and she’s working to find a way to prevent that brain damage before it even happens. Non-medically speaking, prenatal testing can also allow parents who receive a prenatal diagnosis have time to adjust and accept their baby before birth, so that the day their baby is born can be filled with joy, rather than shock and grief. There’s no denying that prenatal testing can be a force for good.
Unfortunately, too often, doctors use prenatal testing as a tool to weed out babies they deem as undeserving of life. And to make matters worse, it’s frequently in opposition to the medical facts, with doctors recommending abortion even though the baby’s condition is treatable, or does not cause death or suffering. This is what happened to Holly Hodgson.
Hodgson was 12 weeks pregnant when an ultrasound revealed that her baby had gastroschisis, a birth defect where the baby’s intestines protrude through a hole in the abdominal wall. Her doctor immediately told her to have an abortion. “The radiologist said it would be fine but then when I went to see my doctor he told me that I should terminate because he had only seen three other cases who all terminated,” Hodgson said.
Instead, she did her homework — and discovered that 95% of babies diagnosed with gastroschisis are able to survive pregnancy. Instead of having an abortion, she got a second opinion from another doctor. Today, her son Teddy is seven months old, and is a happy, healthy baby. Her new doctor didn’t recommend that she have an abortion, but instead just told her that she needed to be closely monitored throughout the pregnancy. When her son was born, medical staff wrapped his intestines in cling wrap, and then a silo bag, for about two weeks, until he had grown enough to undergo surgery to place them back inside of his body. He was allowed to go home after eight weeks, and while there were some struggles early on, he’s now thriving.
The positive outcome for the Hodgsons doesn’t change the cruelty they had to face from that first doctor, though. Hodgson is still upset that he told her to kill Teddy, and over a condition that most babies survive. “It makes me sick and angry when I look back on what he said,” she said. “I was still upset with what he said even though I wasn’t prepared to terminate because I hadn’t read anything about babies being terminated so I didn’t think it was possible. It was a silly thing to have said.” She decided to send him a picture of Teddy, but she didn’t get an apology. “He just responded with ‘Congratulations – I’m glad all went well’. He didn’t say sorry, or that he would take it on board for next time,” she said. So Hodgson decided to speak out, in case other parents go through the same situation and are given inaccurate information. Most people born with gastroschisis not only survive pregnancy, but are able to lead normal lives.
Unfortunately, this experience is not a rare one. Many doctors often deliver a diagnosis of special needs or disability negatively, and it is not uncommon for women to be pressured into having an abortion. Women who have received a prenatal diagnosis of Down syndrome, for example, overwhelmingly report having a negative experience, with 1 in 4 women being pressured into abortion, and even more being given outdated, inaccurate medical information.
Situations like these are truly a tragedy, because they put parents through unnecessary anguish. Prenatal testing can and should be used for its intended purpose: to better diagnose and treat birth defects and disabilities, so that babies can have a better chance at life. It should not be used as a tool to practice eugenics, and weed out people that a doctor feels aren’t worthy of living.